What the HHT?
A blog for the HHT community
News
Global Genes – Cure HHT’s Marianne Clancy Named “Rare Leader”
HHT is Rare As One!
Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network, which will provide funding, tools, expansion support, and training to create a larger, more integrated HHT community! Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan…
Read MoreCleveland – “Woman Undergoes Brain Surgery to Remove Deadly AVM, Caused by Rare Genetic Condition”
Cleveland Clinic – “Every time Lindsay Vos got a throbbing headache, or felt weakness on the left side of her body, she wondered how much longer she would survive. Since 2011, during her senior year at the University of Toledo, the former basketball star…”
Read MoreHHT in the News – Wisconsin
KENOSHA — For most of his life, Mark Schnuck has had nosebleeds. Some have been minor, others severe, but they have just been something the Pleasant Prairie man says he has come to live with…
Read MoreRainbow Rehab’s Rainbow Visions Magazine: Coming Full Circle
Much of HHT education comes from the deeply personal stories of those who are living with the disorder. This incredible article by recreational therapist Lindsay Vos in Rainbow Rehab’s Rainbow Visions magazine is an intimate and honest portrayal of coming to terms with HHT. “Coming Full Circle” follows Lindsay’s journey through denial, HHT diagnosis, removal…
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